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Thomas’ parents had not been sure, since his brain injury, if he recognized them or even sensed their presence. Lying in a hospital bed he looked like a typical 12-year-old boy. If it weren’t for the constellation of cables hooked up to various large machines, it’d be easy to imagine him napping on a weekend afternoon after roughhousing with the neighborhood kids.
Only Thomas didn’t move, and hadn’t for two years. He suffered from a brain injury that left him profoundly disabled. He was incontinent, unable to eat, speak, gesture, or breathe on his own, and dependent on round-the-clock medical care. His parents realized they couldn’t give him the care he needed at home. This is how Thomas came to be in the Holland Bloorview Kids Rehabilitation Hospital in Toronto, Canada, in a hybrid unit that serves as both a permanent home and medical facility to similarly disabled children, who range in age from infancy to young adult. These “silent” children, as they are known, are not in acute life or death situations, but they cannot live without constant monitoring and medical care.
Music flows into places where words can’t reach.
Through months of daily visits to the hospital Thomas’ parents struggled to communicate with their child. Was he aware of what was going on around him? Did he look forward to their visits? They didn’t know, and had no way of asking. This lack of feedback proved to be a considerable challenge, and not just for Thomas’ parents. Research is showing that some form of communication between patient and caregiver is crucial for quality of care: A recent study in the Netherlands of a home for severely retarded adults showed that residents with greater motor and communication abilities received more attentive care.1 And there appeared to be no way to peer into the world of an unresponsive child—that is, until Stefanie Blain-Moraes reached Bloorview Hospital.
Blain-Moraes is an engineer as well as a passionate musician. “Music flows into places where words can’t reach,” she told me. Fittingly, her work has allowed music to flow out of hard-to-reach places. It began eight years ago when she started volunteering at Bloorview. She watched caregivers change diapers, suction saliva buildup from the back of throats, and turn immobile children over.
What struck Blain-Moraes was the effect on the caregivers of being disconnected from the children. She recalls that it took more than a year of observing parents speaking or reading to their child for several nights a week, before she detected the slightest facial twitch or cheek dimple letting them know that their presence gave the child pleasure. Often, the interactions at the hospital were strictly functional.
She determined to find a way to establish some channel of communication, something that would help the caregivers avoid burnout and enhance the quality of care they could deliver. There seemed to be just one possibility: relying on the autonomic nervous system, or ANS. The ANS controls our internal organs, skin temperature, heart rate, pupil dilation, and blood volume pulse. While these bodily mechanisms may not make any sound, they do respond to outside stimuli. Blain-Moraes knew that ANS activity changes with emotional state and stress level. Anger, for example, reveals itself in an elevated heart rate and a rise in skin temperature. Sadness, on the other hand, results in an elevated heart rate but a drop in skin temperature. Happiness is associated with slight elevations in both heart rate and skin temperature.2
Blain-Moraes started to create graphs that showed correlations between affective state and vital signs. While they contained the information showing the children’s responses, the printouts didn’t resonate with her colleagues. She realized that she needed to use another medium, and the idea for Biomusic was born.
The music he heard felt like a manifestation of his son’s personality.
Biomusic sounds something like avant-garde electronic music. Generated using a Musical Instrument Digital Interface (MIDI), it has an ethereal, other-worldly quality. An underlying drumbeat represents heart rate. Skin conductivity—which varies with sweating—controls pitch. Respiration rate dictates the musical articulation and phrasing. The melody and chords are smooth and flowing through the breath, and soften towards the end of the breath. In the first minute of monitoring, the system takes a baseline reading and assigns the average to middle C. So, every instance of Biomusic begins with the same pitch and moves up or down from there. The overall key signature is determined by skin temperature, which changes gradually about 15 seconds after an emotional or physiological stimulus. States of stress, with fast and jagged breathing, sound different than states of relaxation, when the breath is slow and smooth. More subtle emotions can also be translated into distinct-sounding music.
Blain-Moraes first tested the system on her team and found that each person did indeed sound a little bit different. She could even sometimes identify which of her lab-mates was hooked up to the system. The variability in the music was much greater when it was generated by patients with profound disabilities, since their ANS systems are inherently more volatile. But what effect would the Biomusic have on parents as they visited with their children, and on caregivers as they set about their work? Would the sounds be disturbing? Inspiring? If the patients could hear their own music, what kind of effect might this have on them?
To see what would happen, Blain-Moraes and her team recruited a number of residents, caregivers and family members to listen to Biomusic over the course of four visits. They were interviewed before and after the sessions. The results were positive. Thomas’ father said that the music he heard felt like a manifestation of his son’s personality: “it makes me think of the lively boy before.” Changes in Thomas’ biomusic also seemed to express a response to his presence. “When I was at the door, the sound was softer,” he said. “When I was there [at the bedside] it was longer and louder. I think Thomas knows that there is a presence of a loved one.” Caregivers were affected, too. Nurses and therapists reported that the Biomusic strengthened their connection to the children. One told researchers that, “Sometimes we forget …that we just kind of not look at the person, and just do what we have do to. [Biomusic] makes us step back and actually think, ‘Okay, so this is a person.’ ”3
Perhaps it shouldn’t matter that children like Thomas cannot respond or show gratitude for their care. And yet it does. When the nurse said that the biomusic reminded her that her charge was a “person” she invoked a concept with echoes in law, philosophy, and psychology: “Personhood” is a title for those whom we recognize as being like ourselves and worthy of our concern. The act of caring is a relation, not an attitude; it is a duet, not a solo. Biomusic may be making it clear that enough of a person remains inside a “silent” body to receive, and return, love. And that can make all the difference for those who must rely on others for their care.
Jeanette Bicknell is the author of Why Music Moves Us. She lives in Toronto, Canada.
References
1. Seys, D., et al. Resident Behaviors and Characteristics as Determinants of Quality of Residential Care: An Observational Study. Research in Developmental Disabilities 19, 261–273 (1998).
2. Ekman, P., Levenson, R.W., and Friesen, W.V. Autonomic nervous system activity distinguishes among emotions. Science 221, 1208–1210 (1983).
3. Blain-Moraes, S., et al. Biomusic: A Novel Technology for Revealing the Personhood of People with Profound Multiple Disabilities. Augmentative and Alternative Communication, Early Online: 1–15 (2013).
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